Tuesday, April 8, 2014

My Healing Projects

Happy spring, Readers! And not a moment too soon. :)

I thought I would give you a family update and then hint at some plans I am gestating -- either brilliant or nutso plans, TBD -- to guide me toward greater wellness.

As advertised, here is the update: Life is better. I am not continually struggling against the death-grip of anxiety, trauma, exhaustion, illness, and fear. I say "not continually" because life throws crap at you now and then. Of course. But I (along with Ben, and Lars, and Saskia) have discovered some of those quiet interludes in which healing can begin.

We have figured out what we need to recover, and where we can get it.

For Ben, it is a school in the country. Horses. Sheep. Chickens. Sports of every stripe. Community. Friends. Space from the people who love him most, fought like hell for him, and found (somehow) the strength and wisdom to understand that sometimes love and fight are simply not enough.

You would not believe him if you saw him right now -- even if you only know him from this blog. I miss him like crazy, and I am so proud of him I cry when I tell people about him, or talk to his teacher or house parents. I cry when I see him laugh -- YES! He does that now! -- and when he opens his arms wide to me and says, "Mom, can I hug you? I love you so much."

(I am crying right this very minute, in spite of the fact that at my feet lies the pinnacle of fluffy cuteness, with an exposed belly and an inviting look on his face. The Fluff Therapist in IN.)

For Saskia it is a private arts school where she can devote herself to her singing as well as academics, where there are others as devoted to their arts as she is to hers. And (I hope) sufficient time spent on the butterscotch couch with her old lady, watching Bad TV.

For Lars, it is the becalming of his own, previously unacknowledged anxiety, and a desperately needed respite from the trauma and illness that was grinding the four of us into dust.

For me? Oh, where to begin... Well, I am learning to take care of myself. To pace myself every single day so that my chronic pain and fatigue do not lurch into overdrive. I am learning that it's OK to rest, to NOT be a doer every moment of the day. To not be the first person in the room with a book contract or a kick-ass blog, or a wide fan base. (Fan base???)

I am trying to kick the Mombot out of this house. Out of me. And believe it or not, I am seeing some success.

All that learning and Mombot ass-kicking I'm doing suggests something very, very important: that the chaos, the maelstrom, the shit-storm that had occupied my brain 24/7 for the past 12 years, has finally moved on. Not 100% -- I am WAY too anxious and restless for that. But one of the perks of not trying to figure out, EVERY WAKING MOMENT, how you will keep people alive and not let important things slip through the cracks and remember the names and dosages of a thousand-and-one psych meds, and find a way to do your paid work right so you won't lose the job you desperately want to leave but can't -- one of the perks of that is that you can focus on other stuff, like getting healthy.

So that's what I'm doing -- just like my darling boy does in his school and his home away from home.

And that leads me to my healing projects. I'm only offering a hint right now.

One of them looks like this:

And the other? Kind of like this:

Stay tuned for more on the healing projects...as they grow clearer to me I will share the details of them with you.

And now, Readers, I am so exhausted from writing this post I will have to take a little siesta on the butterscotch couch.

Good night. ;)

Wednesday, April 2, 2014

In Honor of National Autism Awareness Day...

I am thrilled to share an amazing essay by my dear friend Daphne, about how music has made a difference in the life of her autistic son, Ben. (Yes, Ben. And it's his real name. ;)

Here's the link:


Do read this. You won't regret it. And as soon as possible I'll bring Daphne back...she and I have quite a bit to say about "autism awareness" and the baggage it brings with it.

But what I want to sign off with now is this:

Autism families, whether you celebrate your loved one(s) with autism or grieve for them (or both); whether you like or hate vaccines; whether it is with joy or a sense of loss that you make the sacrifices we all must make if we parent or live with someone on the autism spectrum -- let's just acknowledge our kinship as people who love and fight for our kids. And people who get bone tired or depressed or giddy with joy, or who are losing brain cells and money and sleep, or sprouting gray hairs, over what we do every single day.

Here's to putting one foot in front of the other -- whenever we manage to do it! YAY us!!!!

Wednesday, March 26, 2014

How We Talk About Depression and Suicide

Yeah, we. As a culture. As parents. As teachers and grandparents and friends.

Believe me, I've pondered this topic many, many times. Those of you who are old-time readers of this blog know why. How do you say it right? How do you even know what to say?

The first time my younger child uttered those chilling words we all fear and prefer not to repeat in mixed company -- the dead words, as I like to think of them -- he was four years old. Yup. Totally impossible...but it happened, then and many times afterwards. You can read about it here.

You might not have known that pre-schoolers can yearn after death, just like teenagers and middle-agers and elderly folks. What they can't easily do, unless they are totally ignored by the adults in their lives, is pull it off. But they can wait for the day they are big enough, or brave enough, to move ahead with it.

There are a few reasons I've returned to the topic that prompted me to start The Striped Nickel way back in 2011. Not one of them is about my boy, who is now a teen, and who can finally think about LIVING his future rather than snuffing it out.


But I've been thinking a lot about death these days. Not because I'm depressed (although at least half the time I am), but because death is all the hell around us.

First of all -- and this is an old, old story but it always makes me cry -- Flanders Field. President Obama was there the other day for a visit. And I was thinking about The Great War and the devastating and beautiful music and poetry that came out of its great brutality and its heaving collective anguish. So that itself made me sad, and then I realized (duh) that WWI ignited one hundred years ago. And that WWII came and went not much later.

I'm not saying it's a BAD thing those days are long past. But I spent most of my life up till now in the 20th century. I was born just about 20 years after the end of the second world war. And I guess I am just getting old.

Then there are all these 21st-century deaths surrounding us.

Death by rogue airplane.
Death by mudslide.
Death by fire.
Death by water.
Oh yeah, and death by totally unnecessary evils, like FUCKING AUTOMATIC WEAPONS in the hands of anyone who feels he might need one while deer hunting. Or people pretending to "stand their ground" while apparently thinking they're just gonna "clean up the streets."

Sorry. Rant over.

This is a really scary, and really hard world. And that brings me back to children and suicide.

Tonight Saskia and I watched a local television program, Chronicle, about a recent cluster of suicides in a neighboring suburb. It's a place pretty much like the one we live in. Affluent, pressured. Nice to look at. Nice to live in if you can find people to connect with. (We have, but not all that many.)

A pretty horrible place to attend high school in.
Our town had ITS cluster of teen suicides between about 2004 and 2006. And these deaths forced a lot of people to think about what the hell is going on in our schools. But not hard enough, apparently, because not all that much has changed.

Sure, we have great suicide prevention programming in town these days, run by a great team, and we have student activists working tirelessly to promote a healthy school atmosphere.

But I hear the talk. I know that kids in our town are always saying things like, "I might as well kill myself if I don't get into Harvard or Yale."

Or, "I don't have time for dinner tonight. If I eat I will not finish my homework until 2 a.m., and it's hard enough to get through the day when I go to bed at the usual time." (Yes, it was my kid who said that, and the usual time is about 1 a.m.)

I know that these high school students have to choose between a little down time after school, a hangout with friends or in front of the TV, maybe some time in the sun, and finishing their CRAZY loads of homework with enough time left over for luxuries. Like food and sleep. I know they stress over what will become of them if they take only two ACCELERATED subjects and the rest merely at HONORS level. And whether not taking as many AP courses as possible will render them unable to attend college and homeless by the time they are thirty.

I know this. It is not news to me. And as sad as I am about three beautiful kids recently lost from the town next door, I am not remotely surprised.

What DID surprise me was how many people interviewed on Chronicle tonight kind of hefted all the responsibility for these tragedies on the kids who took their own lives.

Language like, "That was NOT okay. That was SELFISH. I loved him/her, I miss them, and they made a really bad choice."

Yeah. Damn straight they did. But I'm really not sure suicide is a choice, or that it feels like one to the person who simply cannot figure out a way to keep on living. It is so fucking hard to live in this world I almost can't breathe. And I live in greater Boston, not Syria. You know? I feel RIDICULOUS even saying so, but to me it is true. And to so many others, I assure you.

Getting back to the language of blame: Benjy has never been intentionally selfish. Maybe a little, when he's seriously dysregulated. But he has always loved, and known he was loved. And he has wanted, many, many times, to take his own life. He has even, on the darkest of days for both of us, asked me to help him do it.

I will never, ever say that Benjy made bad choices, that what he felt was "not OK." What he felt was unbearable pain and anguish, and it was not a choice.

Ben did not fail anyone, but a lot of people, a lot of adults and kids alike, failed him.

I hope beyond hope that Lars and I were not among them. Or at least not very often.

What I really wanted to hear from these folks on TV tonight was an acknowledgment that some person or people, and some institution or institutions, failed these terribly sad kids.

They were not bad kids. LOOK at them, for fuck's sake. And I'm sure their parents are not bad either, and are heartbroken in ways I hope most of us will never experience.

Let's just talk honestly about this stuff. You know?

In the Chronicle segment, if you watch it, there's a bit on Needham High School's Own Your Peace/Piece project. It's a cool thing. There's an assembly where kids get to stand up and own their struggles.

Saskia said that last year there was some really raw stuff. Kids talked true. Substance abuse. Cutting. That particular species of despair caused by school-suckage. Whatever.

So you know what? This year the struggles got pwned. They got censored. Or else every student in that school got a lot happier and a lot less tormented. No one talked about the tough stuff. No one talked true.

At least, that is how it appeared to someone who was there. And that person is hugely disappointed in the institutional and adult failings behind this year's Own Your Peace rally.

There's way too much fake talk in this world. Let's fix that, Readers! Let's DO IT!

Friday, March 21, 2014

Making a Comeback, One Inch at a Time

So, it's been more than three months since you've heard from The Nickel.

Yes, I am still alive. Most days, at least. And still trying to write, in my slow and small ways. I DID have a short story come out a month or so ago on the fantastic online young adult lit journal YARN. Click the journal name to read it. This is the Story Formerly Known as "Hello, Kitty." It's got an even better title now, thanks to the brilliance of fabulous writer/editor Diana Renn: "Small Change." You'll see why Small Change works better when/if you read the story.

Because my attention  span and energy are limited these days, I'm going to give you the updates you deserve in a bullet list. Here goes:

  • Benjy, Benjy, Benjy. He looks like the almost-14-year-old boy he is. He is crazy-handsome (but as I am his doting mother you may discount this statement at your discretion). Tall, a bit zitty (but who isn't at 13.10?), athletic. He is the person we always dreamed he could be and more so. Happy, mostly. Engaged. Taking on leadership roles at school. Making very good choices. Mentoring other kids. He's doing chores that I would have (im)politely declined at his age -- and might still. He is doing so well in school. He's recovered his quirky interests, and his focused brilliance. Tonight we will see him moving sets and props at the school's production of The Wizard of Oz. Yeah, he's the chief sets and props guy. Who would ever have guessed? Oh, and he is becoming a star archer. Man, can that kid pierce a  target right on the bulls eye. Nerves of steel and steely focus.
  • Saskia! What can I say? Her goodness is the best part of her. Her conscientiousness, her extraordinary work ethic. Her beautiful and generous willingness to work after school, in spite of outrageous loads of homework as well as community service, to help pay for her voice studies. Never a complaint. But here is the best news of all: through her own hard work -- and yes, talent -- and with a lot of gladly proffered effort on my part around admission and financial aid applications, she was accepted into one of the premier arts high schools in the country starting next year. It's not far from home so she will be a day student, thank goodness -- and she is over-the-moon excited. So are we. And grateful that she can have this chance.
  • Not much new at this point with Lars and me, except that we have bucked the trend of disability parents splitting up due to the pressures of living the kinds of lives we tend to live. We are stronger and better than ever, even though my own life has been altered -- but not necessarily for the worse -- by my new constant companion Fibromyalgia, and all its co-morbid minions.
Readers, we're OK. And I promise to try to bring The Nickel back to life. So stay tuned. And happy Friday to you all!

Friday, December 13, 2013

Oh My Stars...

It HAS been a while.

A while since I've blogged here at The Striped Nickel.

Since I've written anything much, beyond emails and tiny little bursts of admiration or indignation or information on Facebook.

Poor Li'l Twitter-bird must think I've divorced him. Or her. 'Cause I have not dropped by to say hello in months.

It's been way too long since I've worked at anything beyond taking care of Benjy's health and well being, and now, my own.

That is hard work, but, sadly, not paid work.

It's been almost a year since I've gone more than a few days without feeling like I've got the flu. Or run a marathon. (And believe me, I am not fit to run around the block.)

It's been just as long since the hemispheres of my brain were roundly fused together in a functional cognitive globe.

Memory: I don't know, I forget, but it's been a while.

Word-retrieval: Retrieval? Could you spell it?

Creative energy: zzzzzzzzz.

So you see, Readers, I am struggling just a bit. More than a bit. Even though my kids are blossoming, each in their own way. (And really, what could be better than that? Those two shining lights in my life.)

I am in transition. Trying to forge a new path.

The people in my universe are the same: Lars is steadfast, if overworked. He thinks I'm beautiful even on the days I never manage to get dressed, on the days I forget to wash my hair or brush my teeth.

You can't beat that.

I still have Saskia and Benjy in my court, and my parents and brother and sister-in-law and other family members, too. I have the most wonderful friends.

No, not wonderful. REALLY wonderful.

The Hellacious Hound is hanging in there, too. (Prozac is helping with that process.) So I get daily fluff-therapy, PRN.

But I am not here. Or I am, but not in the form I thought I had. I am not talking about my body here, although since losing the damned Risperdal weight I feel good about myself again. I'm talking about who I thought I was.

I thought I was tireless. Smart. My plan was to write one stunning scholarly monograph after another. To get a job at Yale. (Yeah, I know. Dream on. I did have an interview with Columbia when Saskia was a month old. That was a dream too, only a really, really bad one. I'll tell you about it one day and we can laugh together.)

I thought those grandiose things about myself, and once upon a time I might even have been right.

But not now. And so I have to figure myself out, all over again, and I have to figure out how we can survive when one of the adults in this household is recovering from running a virtual marathon almost every day -- but we live by necessity in a town that, for us, is strictly a two-income town.

So in case you were wondering where I am, I am here. Just working hard on other stuff.

Please don't give up on me, Readers. I'll be back, I promise.

Thursday, November 14, 2013

Oh, By the Way...

...and a propos of absolutely nothing, I wonder if Emily Bronte had Asperger's?

According to the Google search I just conducted, others have wondered the same thing.

It's the kind of thing you've gotta consider if you know anything about EB's story. She left behind almost no written record of her short life -- no letters, no diaries -- beyond Wuthering Heights and some juvenilia I believe exists but have only read about second-hand. Luckily, Charlotte loved her and wrote about her -- often a bit disingenuously, but that is what an older sister does when she wants the world to remember her younger sibling as more angel than oddball -- or even worse, social deviant. Because Emily Bronte was no Victorian "Angel in The House," that much I know is true.

I mean, have you READ Wuthering Heights? Heathcliff is no romantic hero, whatever the back of your Signet Classic says, and Cathy is as cruel and dangerous as her soul-mate.

Ugh. Shades of Scarlet and Rhett?
Oh, geez. Really??

The first time I read WH I was a teenager, and all I could do was hug my knees and wonder how so young a woman could have imagined and written down such heartbreaking acts of violence and cruelty. This was the stuff of nightmares, not of love.

None of this answers the Aspie question, but all of it is interesting, as far as I'm concerned.

And that, Readers, is your non-sequitur for tonight.

Once again, The Striped Nickel delivers. FTW!!

All Kinds of Wonderful

I'll bet the title of this post surprised you. You are not used to wonderful here at The Striped Nickel, are you?

Well, if you've been dropping by for a while, perhaps you are, but perhaps you've forgotten. Or think I have forgotten.

I haven't.

Here is some of the wonderful going on around here as we speak:

A. Benjy, Benjy, and more Benjy. He is doing so well, and his school is so amazing, I have to pinch myself a few times a day to make sure it's not all a dream. Readers, he is LEARNING, and not exclusively on his own. He has FRIENDS. He is MUCKING OUT HORSE STALLS AND FEEDING SHEEP.

Sorry, I didn't mean to yell at you. Not at all. I just cannot believe it and shouting allows me to hear it better. It's true, all true.

I love that boy so damn much it hurts. Seeing him hurts in a joyful way, and not seeing him hurts in a missing-you sort of way -- but not-seeing allows healing all around, so it's good. So. Very. Good.

B. Saskia is wonderful. WONDERFUL. Did I mention wonderful? Not sure what Lars and I did to deserve our girl besides contribute some genes of a very mixed nature -- when you have a spare eight hours or so I'll tell you all about our...uh, colorful families -- and teach her the things we strongly believe to be true. Which means she has a deep sense of the urgency of socio-economic justice for all. And she loves books and animals and people and ~OPERA~ and actually has the voice to SING it.

Also, she finds the dog-speak I use when I talk to Noo Noo hilarious. We laugh uproariously at the dinner table when I ask the Hound if he is ready for his Pill-Pocket with a yiddle Pred-nisone inside.

I appreciate that, because really? I think it's probably just weird.

Then again, we celebrate the weird in this household. Pied-beauties, eccentricities, things and people on the far-reaches of "normal."

Oh, and Saskia has brought music back into my life after a long, dry spell -- my own Sahara of the Bozarts, to borrow a witticism from some 20th-century southern writer but I don't remember which one -- and for that I am so grateful. Music was everything to me -- music and books, that is -- until life became so hard I couldn't fit them in anymore. There just was no room.

But every day now, there is more space in me. Every day I get to hear bits and pieces of arias and art songs floating through this house.  Sometimes I get to have them whole. And boy, does that make me happy.

Have you had enough, Readers? I hope not, because there is even more wonderful afoot here. There's Lars, of course. Everyone needs someone to make fun of, and Lars is always willing to oblige.

Somehow he has always managed to love me, even when I could not love the life I was living, or myself. He loved me through those forty pounds Risperdal packed on me, and through the long, sick period last winter and spring, when they fell off. He takes me as I am, the Gestalt, the whole package, imperfect as that may be.

Lars is good people.

Today I had the privilege of thinking about, and talking about, some of the issues that matter most to me, with some very thoughtful people. That there are real things binding all of us humans together, and that much work is yet to be done so that every person is treated with equal dignity and offered opportunities to be happy and to thrive.

It sounds so simple, but somehow it's not.

BUT: I am lucky to live in a place and at a time in which these conversations are possible. How utterly cool. How hopeful. How wonderful.

And finally, there is this:

A. E. Housman (1859–1936).  A Shropshire Lad.  1896.
LIV. With rue my heart is laden
WITH rue my heart is laden
  For golden friends I had,
For many a rose-lipt maiden
  And many a lightfoot lad.
By brooks too broad for leaping        5
  The lightfoot boys are laid;
The rose-lipt girls are sleeping
  In fields where roses fade.

A tiny poem, a profound thought. My Dad gave it to me as a gift when I was maybe ten or twelve. He did not write it, of course, but he wrapped it in tones of love and offered it to me so we could cry together. To this day, I hear those eight short lines in his voice. I thought of it last night because Saskia was talking about the generation of English poets writing around the time of the Great War. This was written earlier, but it trembles with that same unbearable sense of loss you find in Thomas Hardy and Wilfred Owen.

Readers, I have been thinking about "With Rue My Heart is Laden" since last night. It is so sad, yet so utterly beautiful.  Nearly perfect, I think. I hope you like it, whether for the first time or the hundredth. It's the final bit of wonderful I have to share with you until next time.

I hope next time comes soon!

Want to share your own wonderful in the comments? That would make my day!

Friday, November 8, 2013

Keeshond, My Keeshond

First, let me say that Keeshonds (or, Keeshonden, if you want to be all correct and Dutch-like -- and I do recommend being Dutch-like because the Dutch are generally a handsome and very nice people, and their language sounds a little like English and a little like German and a little like something else, which is both cool and disconcerting) are not easy to live with.

Ours isn't, in any case. It's the whole Spitz family of dogs, apparently. High maintenance.

Noo Noo is not easy, but oh is he loved. Probably by only four people in this world (or possibly six, but that might be a stretch). I have named him here at last, which I said I would never do because he prefers his misdemeanors to be anonymous.

I have named him now because I am afraid I may not be saying "Noo Noo" as often anymore, and his is a name I will miss terribly when the day comes that he is no longer living in this house.

Sometimes I over dramatize things. That's what Lars thinks. Although, Lars thought so when Saskia was so sick she kept crashing into the lockers at school and I kept taking her to the doctor to find out what was wrong. For a while the doctor did not know, and Lars said, "You're over-reacting! She has a little cold."

(Germans are apparently such a fierce people that HORRIBLE respiratory infections are merely an inconvenience. Although I've noticed that when Lars has a little cold our house shakes with dramatic sneezes, moans, and groans. Just saying.)

Well, turns out Saskia had pneumonia. Oh, and mono, too. Simultaneously. That's why when Lars tells me I'm over-reacting I tend to ignore him.

Anyway, Noo Noo is sick. This story is longer than my attention span right now, but it started a year ago with a series of seizures, followed by a year of nothing out of the ordinary. Then, a week ago, he started compulsively licking his haunch, until there was a bare spot the size of a silver dollar. He licked that spot until he broke it open, and then he licked some more until it became infected.

Noo Noo will not permit so much as a concerned squint in the general direction of his hot-spot. Woe is she who attempts it.

The OCD behavior was followed by progressive behavior changes this past week: aggression, depression, paranoia (or so Saskia and I think...he sure looked and acted paranoid last night), chewing and licking motions something like tardive dyskinesia (not sure if dogs get that), confusion, random barking at nothing, and oddness of gait.

But at times he was pretty normal this week, too.

Right now he is at the kennel, which is also the veterinary practice where he is a patient. The vet has seen him and is concerned.

Apparently there a few possibilities but the most probable have to do with his brain. Something is not right up there.

It could be a tumor. It could be doggy mental illness. (Can you fucking believe it? I just KNEW I was going to end up triaging even more psychiatric crises. Because, why not?) Whatever it is, he's clearly a bona fide member of our family.

And that sucks for poor Noo Noo, and it sucks for the rest of us. We love him. We need him. And we may not get to keep him till his seventh birthday in December.

I hope I am dead wrong. I thought the same about Benjy not so long ago. I did not know if we'd get to keep him forever. And now I'm pretty sure we will.

Although it doesn't happen often, I am occasionally wrong. Cross your fingers that this is one of those times, Readers.

Sunday, November 3, 2013

You Think I'm Dead, Don't You?

Well I'm not. I'm here, Readers. Sitting by Lars on the butterscotch couch. The Hellacious Hound is snoozing nearby, on the red rug, and Saskia is upstairs pretending to do homework but almost certainly doing other, more interesting things. (Trying on outfits that will not be warm enough when she leaves for school at 7:40 tomorrow morning, for example, or watching something like Parks and Recreation on Hulu, or maybe engaging in acts of Facebookery.)

The fact that I do not know and do not care overmuch tells you something about me right now.

It tells you I am tired.

I did talk to my boy tonight, after a three-day phone call hiatus that was not my choice but which we all survived just fine. My mother reminds me on a regular basis that no news is good news. And usually she is right.

He sounds a bit low these days but he is not in crisis -- yet. Maybe this will the first autumn in four years without a breakdown. Funnily enough, we'd forgotten that this is hospital season, that short days and long darknesses are incompatible with happiness -- in our boy, at least. It's because he has come closer than ever to happiness since I stopped being CEO of his life, that we'd forgotten about hospital season.

But here it is, and all we can do is cross fingers and act all German by pressing thumbs and shouting toi-toi-toi!, and hope he will be OK.

In other news, my short story "Hello, Kitty" will be published at some point (soon, I hope, but you never know) in the online journal YARN (Young Adult Review Network). I did not realize I'd written a YA story. I have never really written for children or adolescents. But my good friend and writing group buddy, Diana Renn, publishes for the young adult market and she told me that I had, in fact, done so.

And I said, "cool."

My other good friend and writing group buddy, Eileen Donovan-Kranz, has a wonderful story out on YARN right now, and if you read it you won't regret it.

Also, I registered Saskia tonight for the 2014 Classical Singer Competition. This is a biggie. She will compete in the first round of the high school division at Boston Conservatory (there are regional first-round venues across the country), and if she makes the semi-finals or beyond she will compete in San Antonio, TX in May. Her teacher thinks she will make it to semi-finals (probably not finals as she is on the younger side and singing art songs rather than arias -- and if you don't know the difference you are in very good company;). So we are excited but also terrified by the implications for our traumatized checking account.

(To be honest, I'm a bit annoyed by the fact that two out of the three composers whose work Saskia will be performing are people I'd never heard of. This challenges my inflated opinion of my own classical music intelligence. Oh well.)

And that, Readers, is that. Glad you didn't give up on me. :)

Thursday, October 10, 2013

Hello, Goodbye

It is such an odd thing. He comes and goes like a dream.

Hello, goodbye.

This is not the way of most thirteen-year-old boys. The healthy and the happy ones stay, mostly. Sure, they go for short periods of time. Sleep-away camp. Sleep overs with friends. School trips. Visits to Grandmas and Grandpas and aunts and uncles and cousins.

But their home is with their parents, their siblings, their dogs or their cats. Their neighborhood is theirs to roam. They feel comfortable in it. Their community -- the one in which their house sits and their parents pay taxes -- opens its arms to them.

Not my boy. He had to go a hundred miles from here to find a community that would open its arms to him. To find a home that was not bounded by four walls, and companionship that was not always and only his mother.

If the cost was seeing Lars and Saskia and the Hellacious Hound and me only twice a month, it was worth it to all of us. I know he misses us. He misses this little house and the butterscotch couch and the trampoline out back. He misses sleeping in his own bed.

But what I have not quite figured out is, which home is his REAL home? Ours? The one he flits in and out of like a dream? Or the one that lies a hundred miles from here, where his friends also live, as does the large staff that helps him navigate life and learning? The one that comes with the three people who love him more than the world, or the one where he can access just about everything he wants to do, and feel successful?

Readers, it is not just that this school has a working farm on it, and lap-bunnies in the classrooms. This is a place that can offer Benjy things like golf (yes, he goes every week to a golf course. He is learning and loving the game). And on-site batting cages. Tennis and swimming right outside his door. Access to a gym where he can lift weights. A ropes course. 3-D printers that will let him create all kinds of cool stuff. A fly-fishing pond a short drive from his current house, and just behind the house he would like to move into (and is self-advocating a strong case for said move).

I could go on and on. But it will just confuse me more. I don't know for sure which home is Ben's real home now, but I am so glad he has them both.

He's coming here tomorrow for his first two-night stay since he left us in early July. To say I'm excited would be an understatement. I'm a little scared, too. But Lars and I have a plan. We're going to keep him active the whole time. After school he plays football and Frisbee and tennis, or goes to the gym or the golf course. Here, he will get to go kayaking, play tennis, do some archery, maybe teach his younger cousins how to throw a football with just the right spin. We're going to have him plan some meals and help cook them. He is going to eat good food.

Most of all, we are going to love him and keep him as close as we should, but no closer. If I had my way I'd just hold him the entire 48 hours, but that is not, apparently, what you do with a happy and healthy 13 year old.

He's not cured. He will live with what he's got his whole life -- just like I do. And so many others, too. But he is learning to manage his Homeric catalogue of Hard Things. What a gift that is, to all of us.

Thursday, October 3, 2013

Something We Can All Do

Readers, next week is Mental Illness Awareness Week.

Were you aware of that?

Would you do something for me? In Benjy's honor? Would you take a few minutes next week to learn something new about psychiatric disorders and the many and diverse people who struggle with them?

Understanding is as important as funding. The brain is elegant and powerful and nebulous. There are still uncharted regions in its hemispheres. We all know less than we think we do about our control centers, I am quite sure of that. Even practitioners with many years of education and clinical experience in the field of mental health are still learning.

And that is such a good thing!

Why some minds are restless or disrupted or unquiet and some aren't is a puzzle doctors and scientists are trying to solve. It's one I ponder all the time, when I look at the face of my dear, darling boy and see pain and dysregulation, then gaze at my beloved girl and see calm and quietude.

I simply don't know. So next week I am going to do some more reading and research. I am going to connect with others who are parenting children like Ben, or who have lived with siblings or parents with mental health disorders. I am going to lend an ear and my thoughts to anyone who needs them.

In case you are interested, this might be a good place to start:

The National Alliance on Mental Illness

Wednesday, October 2, 2013

I Know You're Wondering...

Is she dead? Destroyed by that fluffy monster who eats the brains of those who look him in the eye? Comatose from indulging in too many almond flour muffins?


No, not really. Writing has been hard for me lately. I don't quite know why. Because Benjy is doing things we never, ever imagined he would. He has grown tall and rangy and toned and as handsome as he ever was. He is learning how to live in this world and not want to die in it. He is just plain LEARNING. Yep, you heard it here first.

I get weepy with gratitude and joy when it strikes me that I now have hope.

A treasured clinician said to me once, when I told her I had no hope left, "But I have hope. And I will hold it here for you (pressing hand to heart) until you are ready to receive it."

Readers, that was one of the most beautiful gestures anyone has ever made to me. (Mindy, if you are out there: <3)

So, my silence is not conceived of my own child's struggle. It might be the fibromyalgic fog that envelops me these days -- a brain not quite so sharp as it used to be.

But there is something else: I am tired.

It's really that simple. I need rest.

Recently, I have had to go back into Mombot mode, rally all my depleted resources, tune up my adrenal glands and rush to the aid of a very deeply loved and very deeply suffering relative.  A beautiful and smart and unbearably sad young woman. I had to do it but I was glad to. For her, anything.

I wish I had been more attuned to her suffering when she was just a bitty little girl. (Although, it can be so hard to know, even when you share a house with someone. I suffered as a girl, and I think, for those who loved me, it was hard to tell just how deep my pain was.) And when she was growing up not so nearby, and then when she went to college practically down the road from where I live. And all those times things went awry but I was focused on my own child -- and later, finally, on myself.

But I had this moment of gorgeous clarity the other day, when I was planning with doctors and talking to family and making arrangements for her, the best I could.

This is what I thought: Let's move forward. Let's look to the future and not the past. No one can erase all those years of suffering. But we can help now. It's never too late, you know? Like when you adopt a dog or a cat -- or a child!!! -- who was neglected or abused by the people previously responsible for her. (And no, I do not mean to suggest that this person was neglected or abused. Just struggling mightily.) The scars may remain and they may not, but you can offer respite and repair. You can make things better going forward.

I've missed you, my Bloggy friends. I've missed writing you these letters (they ARE letters of sorts, adapted to this post-digital universe we inhabit together). I miss my child, and exult in the presence of my other child, who is an unbelievable joy. I miss my old energy and drive.

But I must say, things are not so bad. Today I gave myself permission to buy pizza for dinner, even though there will be others at our table tonight. And I think I can see my way to finish an essay I started a while back.
The essay is about the paradox of a daughter and granddaughter of Holocaust victims falling in love with her Worst Nightmare: a German, a child of Nazis. And let's not forget the sartorial nightmares, of which I have written right here at The Striped Nickel, and which may even be worse than the concentration camp nightmares.

(Lars, you are the WORST DRESSER I have ever met -- except on the rare occasions you heed my advice and TAKE YOUR SOCKS OFF BEFORE DONNING THE BIRKENSTOCKS. Oh, and Lars? I love you.)

I guess this is where I end the letter. And what is it I'm supposed to say?

Sincerely Yours?


S.W.A.K.? (Remember that, fellow children of the 60s-70s?)

All my best?

Kuss und Gruess? (Only if I am writing in German. And I only talk in German, so this one is out.)

OK, I'll go with this:

C Ya L8tr, Dawgs.

p.s. it has been so long since I've blogged, and since my brain has worked to full capacity, that I cannot for the life of me remember how to spell-check on Blogger. Apologies for any typos. :)

Tuesday, September 17, 2013

This is The Face of Evil

Don't let his goofy pose fool you. He's armed and dangerous.
Pensive? Self-controlled? I think not.

Do NOT look him in the eye or he will eat your brain. Just because he wears spectacles doesn't mean he's an intellectual.

I think these pictures speak for themselves: We're all in trouble. You can read about some of this hound's malfeasance in the October issue of O, The Oprah Magazine. After you do, go hug a toddler or a bunny.  Or pour yourself a stiff drink -- you'll need it,

Sunday, September 15, 2013

"Falsies" has Arrived!

Only it has another name. ("Breasts are not a Requirement." I kinda liked "Falsies" better, but I can see that's more of a lit journal title than a glossy mag one.) It's hot off the press in the October issue of O, the Oprah Magazine. I am so grateful to be in such good company!

I'm featured on the Contributors page as well as somewhere in the middle of the magazine (the essay itself). Check it out!

Someday, when I am able to complete my essay collection, a longer version of this essay will be available. Readers, you'll be the first to know when the day comes!

Gone Like a Dream

The title of this post is taken from a letter Charlotte Bronte wrote to her dear friend Ellen Nussey, just after her sister, Emily Bronte, died of consumption (i.e. tuberculosis). "A sister, gone like a dream..."

That is such a sad thought, and a beautiful thought at the same time, although I'd imagine the reality of death is not often beautiful.

It was not beautiful the one time I watched it unfold, nor was or is it poetic when I am trying desperately to prevent it from claiming my child.

I too had a sister, gone like a dream. But it's Benjy who takes me back to that tiny cursive sob, penned on paper now yellow and brittle, around 170 years ago in Yorkshire. I held that very paper in my hands once, and took in Charlotte's controlled anguish. I tried not to drop my tears on it because it was fragile and terribly important and I did not wish to spoil it.**

It feels right and it feels wrong that I think of Charlotte Bronte and her bereavement -- an entire family, and a large one, dead before she hit middle age, and she herself buried beside them so that the father, Patrick Bronte, was the last one standing -- when I pine for Benjy.

In a letter to Ellen -- it might or might not be that same one, my memory fails me -- there speak three small but chilling words: Emily is dead.

My god, that is heart-breaking.

Benjy is not dead, just away. But he is a son gone like a dream.

It has been almost ten weeks. We speak most nights. Have visited him there, three times. And yet, his absence keeps surprising me, because he is in many ways so present.

I expect to hear his footfalls on the stairs, and then I am disappointed. It is only Saskia's, or Lars's steps I hear. It's not that I don't want to hear that they are with me, my beloved two. It's just that -- well, that one right angle of the square that is our family has disappeared, and the equation I had learned to understand no longer computes.

That's just a pretentious way of explaining that the old life seems like a fleeting dream. I can be pretentious sometimes.

BUT. I need to let you know that my boy flitted in and flitted out this weekend, his first visit home since starting the new school, and for a precious twenty-four hours our family was whole again.

Here for a wonderful 24 hours. Gone again, like a dream.

Mostly it was great. We had some rough spots. Some tears. We also had lots of sporty stuff going on -- tennis, biking, football tossing (Lars's domain, not mine).

But look, here's the best thing of all. We have renewed hope. When there is more time and less on my plate I will post a bulleted list of all the things Ben can now do -- things that many parents of young teens take for granted, but not us. He is as smart as a whip and completely impaired at the same time. An odd thing, but there it is.

Thanks to this new life he is leading, the impairments are very slowly diminishing. The smarts are still there, and with less anxiety and depression to hold them back, and many new life skills gained, I think some good things lay in store for my boy.

Happy, happy me!

** I have a short-short essay about the day I held that letter of Bronte's in my hands and tried not to cry all over it, coming out soon (I hope). Stay tuned.

Friday, September 6, 2013

Know What I Did Today?

I smacked down Mr. Blake Irving, CEO of the domain hosting company that makes www.deborahvlock.com possible. In the nicest of ways, because that's what I do.

Blake was soliciting feedback on his company's awesome new site design. Because, ya know, he CARES what his customers think. He knows we're courageous, and smart, and out to change the world, and he respects that.

I might sound snarky, but I believe he means it, more or less.

BUT... well, here's what I wrote. I think it speaks for itself:

Dear Mr. Irving:
Thanks for your email and the opportunity to comment on the new GoDaddy site design. It's both visually pleasing and user-friendly, so thanks!
Since you are soliciting feedback, I thought I would let you know that your commercials -- I believe during the last superbowl (but I could be mistaken) -- were so incredibly offensive to me, as an educated woman, that I almost went to another provider. (It was only my too-full schedule that kept me on board with GoDaddy.)
I hope you will consider the dignity of ALL of your users next time your advertising team is working on high-profile commercials. Overtly sexualized (and dumbed-down) images of women are a turn-off for more than half the population -- and I'm willing to bet a big percentage of your paying customers.
Anyway, I really do appreciate being given the chance to weigh in. I like what you've done with your site and your openness to dialogue. I hope to be able to continue indefinitely as a GoDaddy customer.
Deborah Vlock

I.O.U. Redeemed. Hound Not Redeemed Yet, But He's Working On It.

Peoples? That happy post I promised you?

He's right here.

So comfortable he's almost comatose. Fluffier than a kitten named Fluffy.

Don't worry -- the blurriness is my crappy iPhone, not your middle-aged eyes.

You smiling now? :)))

Monday, August 26, 2013

Tough Day (Parental Warning: Rated R for Rant-Oriented Material and Violence Against Optimism)

I am getting better acquainted with my new Ways of Being. The new ways of hurting, for example. Joints and muscles that ache and throb. Legs and arms weighted down with invisible concrete blocks. You can't see them but I can feel them. You betcha.

Last night, the right side of my face prickled and burned and numbed up (is that a paradox? Good. I like paradoxes. They confirm my belief that not  much in this world makes sense). When I touched my fingers to my right temple, the barest pressure hurt like crazy.

Like crazy. I thought I might be dying but then I Googled "fibromyalgia and nerve pain side of face." Apparently it's all good. I'm not dying; my body is just acting fibromyalgic. Cool.

I dislike the physical stuff because it keeps from doing useful things, and things that are not useful but pleasurable. And it is a near-constant (and wholly sucky) reminder that I am neither strong nor invincible nor much of anything right now.

I am that person who sits around and likes things on Facebook and sometimes watches TV and eats more than she should, and sometimes does nothing at all but stares at walls like a senile dog. Also, I sometimes buy myself little objets d'art at TJ Maxx, which are inexpensive and mass-produced and not really art at all, but I like to think of them that way.

Little blue-glass objects, like this:

[pretend you see a blue vase inserted here. I was gonna take an iPhoto but as it turns out I am too lazy to throw in extras tonight.]

$4.99, and they even swaddle it in tissue paper for the ride home.

I only do this TJ Maxx shopping when I am not too tired to drive two miles down the street. Once, twice a week? Maybe. Maybe not.

But you know what? If the pain and fatigue suggest I'm no longer the super-mombot I once was, they are also a reminder that I am alive. Warm-blooded and sentient and possessed of physical parts. I'm a walker of dogs (one dog, and not very briskly, I must admit) and a driver of daughters. A lover of husbands (one husband, if truth be known) and a some-time "good-cooker," as Benjy once pronounced me.

I appreciate the reminder. It helps. Because my other New Way of Being is pathless. I am a car without a road. A horse without a trail. I am totally fucking lost because my boy is gone and I am no longer his primary advocate.

I am not scheduling his doctor's visits. Nor am I triaging psychiatric crises. I'm not a short-order cook, a reluctant McDonald's enabler, a policer of computer-games. (Well, I was never really good at that one, anyone.) I no longer seek desperately for antidotes to despair.

Frozen yogurt? I'll get you a large one.

Cupcake?? Whatever kind strikes your fancy.

Tennis??? Of course not.

Well, how about an Ativan??!! (I'll take one, too.)

And even though I yearned and longed and even prayed (in my Jewish-atheistical way) for relief, for rest, for a little break -- just a few days, maybe a week -- I am so empty now, without him, I cannot bear it.

My god, I miss that boy. When he calls happy I can bear it, because HE can. When he calls and begs me, sotto voce so he will not be heard and reprimanded, to take him back home, I am frantic. Frantic. Because he is there and I am here and I cannot scoop him into my arms and make him better.

What I need to remember is, he is too big for scooping and would be even at home, and in any case I have never been able to make it better. Not longer than an hour, maybe a day.

That is my crappy truth. I have tried my very best and my very best was never enough.

Before I married Lars and had kids, I was going to be an Academic Star. Then when that didn't pan out, I was going to be a critically acclaimed novelist. I figured I could live on four hours of sleep a night, and I would just write after everyone else conked out, and I was not needed.

When that didn't pan out I was just going to settle for being the Best Mom Ever. See above.

So I'm trying to find my way. I am FIFTY YEARS OLD and trying to "find" myself. I know, it's ridiculous. I was supposed to do that in my early twenties -- but in my early twenties I had it all figured out.

And the joke was on me.

What I am trying to do is focus on my health -- to relax a little. But I don't know how to relax. That is something they do in Italy, in Spain, maybe. In some places people know how to sit and linger over a meal. They know how to just be in the moment. I don't think we're quite as good at that in America.

Or maybe it's just me.

There is a bright spot, however. In between staring at walls like a senile dog and not knowing how to just be in the moment and hauling my cinder-block appendages up and down the stairs of my house I am accumulating awesome writing fodder.

To paraphrase my beloved brother's immortal words, I have reached the apex of fucked-up-dom, and how lucky is that? I will never run out of things to write about. Fortunately, writing is something I do pretty well.

That might not be immediately apparent, as I've just held you hostage, Dear Readers, to a long and ill-formed and EMBARRASSINGLY self-pitying rant.

I'm sorry.

I do that sometimes. I hope you will not hold it against me. In return for your patience, here's an I.O.U. for a happy post.

Maybe in a couple of days, OK?

A Little Regret Creeps In

Only because in my sense of injury and feelings of outrage, I wrote a piece that might sound callous towards children with progressive illnesses not of the psychiatric variety.

Please do not think that I am. My sister died of cancer. Several friends did, too. They were not children but they were far, far too young.

My heart goes out to anyone who suffers from a life-threatening illness of any sort. Hey, I even feel sadness for those of us dealing with chronic illnesses. They can suck, too. I speak from unfortunate experience.

So, please forgive me if that last post came out the wrong way.

Just another reason not to pick up pen or keyboard until properly cooled off.

Well, Eff You Too, Famous Charity for Sick Chidren

OK, I should probably never wield a pen (or keyboard) while pissed off. It usually results in something I deeply regret an hour later.

This one I don't think I'm going to regret.

A couple of days ago I read in our local paper about a girl who suffers from a disorder that causes cognitive disabilities. There was no indication that this disorder is progressive or life-threatening but it may be. I have to dig out the article and do some research.

In any case, this child and her family have no doubt suffered quite a bit from living with this disability, and I was thrilled to read that she received a very lovely and generous gift from a charity I will not name here, but whose mission is to comfort children with progressive or life-threatening illnesses.

All good. I felt great reading about that. And then I had a thought: what if this charity we all know about and admire does not simply help children with cancer or other medical diseases that offer very poor prognoses?

What if, through all these years that Benjy has been suffering, his small shoulders bowed under the weight of a sadness so vast I doubt it will be sustainable over a lifetime, we could have appealed to this good charity for something that might have eased his burden just a little and made him smile?

Like that trip to Disney World most of his classmates seemed to have made multiple times? I always had to tell him no, and while it was mostly about money, it was also about Ben's inability to do some of the things that come so naturally to "typical" children. How on earth would he survive the trip and the crowds and the noise and the stares of other children?

There was no way we could make it happen. So again and again I grasped for a way to say it that would not hurt. "I'm sorry, Ben. We can't do it this year. Maybe another year."

I could not keep this horrible thought at bay: Maybe when you are grown up, or pleasegodno, no longer with us.

Anyway, even though Ben is living at his school now, and doing better, my interest was piqued. (Besides, I wasn't born yesterday. I know "better" is usually followed by "helluvalot worse.") I went on the website of this vaunted charity and read up. Turns out your kid does not have to be at death's door to qualify. In fact, many of their recipients go on to live full lives. They just have to have a diagnosis that COULD result in death.


So I wrote a little query to our Massachusetts chapter:

Good evening!

I am wondering whether a child with severe psychiatric disorders (including suicidality) and a history of frequent psych hospitalizations would ever be considered eligible for [your program]? I did not notice anything on your website that addresses the issue of mental illness.

Thank you so much for whatever information you can give me -- and of course for all the wonderful work you do.
Best wishes,

Deborah Vlock
Here's what I heard this morning in return:

Good Afternoon Ms. Vlock,
Thank you for contacting us regarding a child with mental illness.  I am not sure if you are familiar with the mission of Charity X.  We [are concerned with] children between the ages of 2 ½ and 18 with life-threatening medical conditions, that are progressive, degenerative, or malignant.  I am sorry to share that we cannot help you and your family at this time.  If you have any questions, please feel free to contact me...
 OK, great. Awesome. Will you bear with me, Readers, while I exercise my super-duper lit crit skills and parse this response just a little?
The part I'm interested in is the part I bolded -- especially the words "life-threatening," "progressive," "degenerative," and "malignant." Apart from the fact that "progressive" and "degenerative" are pretty much redundant (yes, I can be a language bitch if I choose to), all four of those descriptors -- or at least the first three, and I would make a semantic if not medical case for "malignant, because Holy Cow is this crap malignant -- can and often do apply equally to such conditions as bi-polar disorder, schizophrenia, major depressive disorder, and any other mental illness that induces suicidal impulses in a child.
Let me inform you, Kind Representative of Vaunted Charity, that a child who has a long history of wanting to die, who repeatedly hurts him- or herself, who is on a revolving door into the hospital, has a progressive, degenerative, and life-threatening illness --  except for the lucky ones whose symptoms can be controlled or at least maintained through medication and therapy.
What I would like to ask this well-meaning, but perhaps not so well-educated person, is this:
Why is the misery caused by progressive cancer more worthy of your organization's attention than the misery caused by illness that originates in the brain? And does the non-eligibility of illness that originates in the brain take brain cancer out of the running? Or do you just discriminate against brain diseases that are nebulous and confounding to patients and doctors alike, and whose prognoses are harder to quantify. Illnesses that are not treated with surgery, radiation or chemotherapy, but treated with medications and hospitalizations that may help and may not, and which can wreak no less havoc with a child's body and spirit than chemotherapy drugs?
There is a problem here. It's that people do not understand mental illness as a real illness. And that has GOT to change.
Or else, people believe that every boy or girl (but especially boy) with a psychiatric disorder is going to shoot up a school or a movie theater.
Let me assure you, this is far from the truth. The vast majority of people who suffer from mental illness will hurt themselves before they hurt anyone else. My boy would not hurt the smallest insect, but he has injured himself many times. And many times he has wished he could summon the courage and the resources to end his life altogether. He has even begged me to help him do it.
So, I had this fleeting joy at the thought that there is a charity out there that wants to help kids at risk of dying. Just in case this new school does not work out and Benjy's misery returns to the old endless capacity.
How wonderful, that fleeting hope -- that maybe something could be done to bring him some pleasure in his darkest days.
Boy, what a let-down.
I think it's time to get active. I'm going to arm myself with statistics and get back to these folks. Not just for Benjy, but for all the children in this country whose illnesses are routinely stigmatized and brushed off. Whose suffering is compared negatively to the suffering of those with "medical illnesses" -- and really, I MUST take exception to that distinction, as psychiatric illnesses are very often due to malfunctioning brain chemistry.
So I'm going to get back to them, and if they blow me off I'm going to really get mad.
And then, they'd better watch out. I've been seeking a purpose since Benjy left us and my own medical issues have been keeping me down. Maybe this is it.
I'll let you know if I need your voices, and you can let me know if you're in. I know you will be, Readers.... you've been "in" since you started reading this blog -- and for that I love you.
#forBenjy  #forALLthekidswhoneedhelp

Monday, August 19, 2013

And the Party's Back On...For Now

Okay, for the umpteenth time I have written a post that turns out to be untrue.

It's not that I'm a liar. Or being "writerly" and making stuff up. It's just that my boy changes moods like a teenage girl changes clothes: frequently, and often for no discernible reason.

Hey -- is that why they call it a "mood disorder"?? Huh. Who knew? ;)

So I either need to wait a day before posting doom-and-gloom status updates, or I need to qualify them with "wait a day or two and things will be better."

The day after the episodes I described in my last post, Benjy was happy and even CHATTY on the phone. (All you readers who are parents of teenage boys will understand why I put "chatty" in caps.) And he continues to do well, as far as we can tell.

We miss him so much, even though our house is noticeably less stressful now that he is not in it. Doesn't that sound awful? Man, it sure feels awful when I say it. It makes me feel like a horrible mother -- callous and self-serving.

I am not either of those things, which is why the feelings bouncing around inside of me are so damned confusing.

How can you love a child as much as I do mine and feel better when your home is no longer his? This might make sense if he'd gone off to college at 18. But he's 13, a young 13. And one day we just let him go.

But that sounds all wrong. It IS wrong. We helped him go to a place where he has half a chance for happiness and success. And you know what? It seems to be working, apart from a relatively few moments of sadness on his part.

We had our eagerly anticipated bi-weekly visit with him on Saturday. Apart from a panic attack in the car halfway through (Ben, not me) it was wonderful. Just wonderful. He has grown in so many ways, I cannot believe it.

But Lars and I have to deal with his absence and it is harder even than we thought it would be. Last night we had a rare evening out, just the two of us. Oh, it was lovely. We felt young and happy. The last time we'd been at that restaurant Saskia was a very new baby and we thought I might get a job offer from Columbia University. (We were obviously mistaken.) We dreamed and planned and thought we might live in the Manhattan neighborhood my family settled in when they fled Germany in the 1930s. Washington Heights. We thought we might be able to afford it there, and besides, there is a wonderful, beautiful park overlooking the Hudson at the end of my Grandmother's street, Fort Washington Ave, and I always loved that place as I was growing up.

The dinner was great, but sadness crept in and we had to force it back out. We just plain miss our boy.

Funny how plans get derailed. The Scottish poet Robert Burns said it best:

The best-laid schemes o' mice an' men
Gang aft agley,
An' lea'e us nought but grief an' pain,
For promis'd joy!

I love that to Burns, a little field mouse was worth a poem. (Then again, he also wrote a poem about a louse he observed on a lady's hat at church. So you know...) I think there's a lesson in there somewhere, something about the value of those small things we tend to think are unworthy of notice.

I think there is a lesson to me in that, for sure, as I try to figure out my life going forward.

Readers, I think I will be blogging more about me in the near- to mid-future. I won't forget Benjy, no fear, but my own path has taken yet another unexpected turn. It's called fibromyalgia. I've mentioned it more than once before, and I am trying to master it. If I can't do that, then I will have to learn to live with it on mutually congenial terms. I am trying to figure out a path to physical and emotional wellness.

Anyway, here is a little parting gift, a  memento from our visit with Ben on Saturday:

I only put this in because you can't see his face. I love the colors in this photo. It was really like that -- a clear, bright, vivid day. The red building is Benjy's house. I think what I captured here was a pause in his Frisbee toss with Lars. A few minutes later he walked back to his friends and we were on our way. If we have to leave him behind I am glad it's in such a beautiful place.

Ben, I know you won't read this but my heart is so full of love for you it seems to take up all the space in my chest. Be well, my darling boy. Be happy. You are so loved. xo Mom.

Saturday, August 10, 2013

And the Party's Over

Oh, I should have known it was too good to last. Even though the director of the school told us about that month-long "honeymoon" period, in which students love everything about their new lives, followed by a big dose of end-of--vacation blues, I thought we were in the clear.

I thought I could start worrying about myself, taking care of my own, increasingly significant needs. I thought I could try to relax. To sleep more and better. To exercise (as much as I could swallow -- unfortunately, exercise and I do not get along very well). I thought Benjy was all settled, with friends and activities and good food in his beautiful green-meadow-and-dry-stone-wall corner of New England.

I guess I thought wrong, once again.

The sad phone calls have returned. We'd only had two of those at the very beginning of his stay. Three at most. But they're back.


They always start out OK. With a forced optimism that makes me think (fool that I am!) that this time I've dodged the bullet. That he really is happy.

Benjy: Hi Mom!

Me: Hi Ben! How ARE you?

Ben (slightly flat in affect, but that is his usual mode): I'm good.

Me (all bouncy): What did you do today?

Ben: Uh, I played Mumbleply.

Me: I'm sorry, could you repeat that?

Ben: I played Monopoly. And mumblemumble with credit cards and you can mumble stuff.

(Benjy has developed a habit of rushed, slurred, and mumbled speech. I guess it's from all those pills he knocks back every day.)

Me: Wow, that sounds like FUN! A new version of Monopoly with credit cards? And did you play with your FRIENDS in your house?

Ben: Uh, I guess. Oh, and I have earned $20 in allowance. Tonight when we went to the store I spent half on a card game.

Me: Awesome! Good work! And you can play it with your FRIENDS?

Ben: Uh, yeah. Whatever.

Readers, I think you know where this is going.

Me: So, what else, Honey?

Ben (in a lowered voice): Look, can I just tell you something?

Me (heart sinking): Sure!

Ben: This place is not for me. I miss you,. I want to come home. No one will be friends with me here.

Me: Honey, I heard you've made a great connection with C.

Ben: C is leaving end of August. I want to be a day student. Can't you help me? Can't you get me out of here? I will go as a day student. I just miss you and want to be home.

And then, Readers, the tears fell. His tears and mine, although mine were, and must always be, secret. As hard as it is, I have to be strong.

I told Benjy that he cannot be a day student at a school that's an hour and a half from home. It just will not work. Of course he did not believe me. I am so afraid he thinks we don't want him with us. That we've thrown him away. Oh god, that thought is killing me.

I tried my best to remind him of his sadness and loneliness at home. Of how little there is to do, and how our lack of expendable income rules out most of the little there is. (Benjy is not a fan of free stuff, like strolls along the river, unless he can bring his fishing pole. But I don't feel qualified to supervise fishing.)

I tried to remind him about the revolving door into the hospital, how that is no life for a boy of 13.

It didn't work. He tried so hard not to cry but I suppose in the relative privacy of the porch of his house, with my familiar voice in his ear, he let himself go. It's what happens now.

I asked him to get the house mother on the phone. He said no at first, because he thought he would get in trouble for having a negative conversation. I promised him that would not happen.

"This was not negative," I told him. "You are feeling sad, and you shared your feelings. That is OK, and I will tell her so."

So he fetched the house mother and we talked about Ben. He is having trouble connecting with the other kids -- especially on weekends, because on weekends his house closes up and he goes to stay in another house, where the kids are less familiar and older.

This is one of the few things I don't like about the school. Most other kids in his house have been there long enough to have earned home privileges every other weekend. So with only one or two kids around, they close up Ben's house every weekend and consolidate with another. This would be hard for any kid, but for a kid with Aspergian social skills?


I can see I need to get to work on this. The next thing I do this morning will be to compose an email to Ben's therapist. Someone has to help him figure out this weekend stuff, fast. I don't know how many more sad phone calls I can take. And as I am trying to climb my way out of this well of pain and fatigue I now dwell in, I need to try to fix this fast. Because each time he asks me for help and I have to say no, I get a little sicker.

Today, at least, he's going to the beach. Sea-gods (or lake-gods, more likely), be kind to my boy! Let him have some joy and some fun. And maybe, if he does not find a friend today, he'll find some cool fish or crabs to observe. Ben has always loved poking around for those little constituents of the shallow waters.

Sunday, August 4, 2013

A Room of His Own

We saw him. For two-and-a-half beautiful hours. I was so frightened of what might come of it, I shivered halfway to Connecticut.

The drive took forever. We sat for an hour around Worcester, trying to crawl our way out of Massachusetts.  I dug in my purse for Ativan, but came up empty. The reason being, I am on a new med to combat my fibromyalgia symptoms -- severe pain all over the place, fatigue, and sleeplessness are the most confounding of the lot -- and I have no idea whether my as-needed anxiety drugs will kill me if taken jointly with Elavil.

So I removed the temptation before we left home.

We arrived half an hour late. Benjy was waiting for us in his therapist's office. His back was to the door, his head bent over some object he was fiddling with.

"Ben?" I said tentatively.

"Mom?" he said shyly.

"Can you stand up so I can hug you?"

He did, smiling. And for ten or twelve seconds I had the feel of his warm body, the itch of his wiry hair against my cheek, all to myself.

For those ten or twelve seconds he was mine.

Saskia and Lars hugged him too. We remarked upon his incredible good looks: he has lost most of the weight put on by his cocktail of medications. He is fit and tan. He still looks dazed, but that is what Abilify plus Lexapro plus Tenex will do to a person.

He is also very much alive. That is the other thing Abilify plus Lexapro plus Tenex can do.

We sat and talked with the therapist for half an hour, and then Ben and Saskia and Lars played some Frisbee. There was one close call -- a moment of frustration and self-loathing on Benjy's part when he did not perform at Frisbee the way he'd hoped to, in front of his family -- but I figured lunch would avert the storm, and it did. When Ben needs to refuel he needs to refuel.

We went to the pizza joint down the street and ate al fresco. It was lovely, being there all four of us together. Benjy seemed quiet, but content to just be in the moment. There was no restless seeking, no yearning for the Wide World to be his own, to fill the aching void inside him.

I'm not sure that void exists anymore.

I said to him, "I think this was a good choice we made for you, don't you?"

And he nodded and smiled and said, "Yes."

We asked him what he would do when we had to leave, and he said, "Just relax."

I asked him what that meant, and he said,  "You know, just hang out with my friends."

My friends. I am almost weeping even now, two days later, when I think of that. so little to ask for. Saskia does that all the time. Hangs with her friends. Lars and I do, too.

Benjy never really had that, and now he does. He seemed emotionally flat the other day, but also content. Quiet but comfortable with his new life. As Lars reminds me,  flat and quiet are Ben's baseline. Comfortable and content are not.

Readers, this is something to rejoice. When I held him again for another twelve seconds, laid my cheek against his curly head and told him I loved him and would miss him, I felt his absence like a gaping wound in my chest. Right where I suppose my heart beats.

He is in some ways already gone, even though we will see him again in two weeks, and for more hours. He has found his place, a home that works for him. It is not the same home the rest of us inhabit.

I am trying only to be glad about that, to think of my boy and not myself. This is my crowning achievement.

Think about it: my crowning achievement as Ben's mother has been to find him another home. Writing that just now nearly killed me. It defies logic. It is not supposed to be the way of things. Not at all. Not in families like ours.

That is our heartbreaking truth. If our child is to be okay, to live and live an independent and productive life, he must move henceforth on a trajectory away from here. From us. Most every child does that, but not so often at 13.

Yet, mental illness defies the "normal" way of things. There is nothing to understand about unquiet minds, not really. Not in the same way that numbers or landmasses can be calculated and mapped and darkness can be penetrated by light. You can only learn how to tiptoe softly around the landmines, locate the best and most reliable paths and then cross your fingers -- because invariably, from time to time, you will tread in the wrong place.

As sad as I feel about it, I think we have trod in the right place this time. Ben's new home is working for him in ways you would not believe. He is doing things we never dreamed he would -- and in one short month. I'll write more about these wonderful accomplishments soon -- small steps toward a state of functionality in this World we all have to function in if we possibly can.

All in all it was a wonderful visit, except it left me with a horrible migraine -- probably the result of my own emotional turmoil.

I am trying so hard not to blame myself that it has come to this. And to overcome the physical and emotional dysfunctions that eleven years of living on high alert have wrought in me.

I am trying to be happy for Ben, that finally he has found his place on this earth, that he is happy and successful, and that he is able to be those things without me by his side.

And I am trying to quell the fires in my head. Migraines suck. This is my first one, and it's a doozy. Saskia knows all about them, and she's given me some pointers. Tonight we will be with my brother and sister-in-law and their family, which I think will be healing in itself.

Wednesday, July 31, 2013

Count Down

In two short days I will see my boy. My young man. Less than 48 hours.

Oh, I can barely wait.

I will report back on the visit. We only get three hours total, which won't nearly be enough. But at least I'll get to feel his hugs and see his green eyes and listen to him tell us about his new life. I bet I will even  see some smiles.

I feel like I did when I was a little girl waiting for something special to happen, and the wait was unbearable.

Saturday, July 27, 2013

A New Diagnosis for Me

"No, really," I told the Universe. "It's OK. I have more than my share already."

But the Universe can be heartless. It silently, and without apology, handed me another one.

It's called fibromyalgia. It sucks. But it explains almost all of my symptoms since the winter: pain everywhere, enormous fatigue, GI stuff, revved-up anxiety, and depression. I had a brief reprieve -- maybe two months -- and now the symptoms are back with furious intensity.

This fibromyalgia is most likely the result of persistent and prodigious stress over the many years of trying to keep my child safe from his own self-injurious impulses. Of trying to keep him alive and happy (the latter quite unsuccessfully) and never knowing from one hour to the next when or where the next bomb was going to strike.

Man, that is one hard job. I kind of feel like I've earned a ginormous salary but someone forgot to cut my checks. At least, when I let myself think about it, which is not often because it is too damned depressing.

So I have to figure out how to manage these symptoms AND live this new life that is not bounded on all sides by disability and crisis. (Although I guess it is -- my own and not Benjy's.) I started a medication last night because there is only so much sleep you can do without until you start obsessing about Fatal Familial Insomnia (remember that? Yes, I am obsessed with it and have written about my obsession in the past. That has got to be one of the worst ways to go. I'll spare you the agony of a link to a site about it. You're welcome. ;)

Pain all over = no sleep. So I started this new med and of course I feel like crap today -- completely drugged up and still in pain. Because meds and I apparently DO NOT MIX. Kind of like Vicodin and Vodka.


I find it all very confusing. So off I go into the world of medical research once again. I'll let you know when I figure this stuff out. I think I will, if I can muster the energy to put in some effort.

If anyone out there has any ideas, let me know!